Restless Legs Syndrome (RLS) Discussion Board

Nicely done Jumpy! Just finished it and it was quite thorough. Your efforts are greatly appreciated, Heron Pretzel: From the 2004 RLS Medical Bulletin "It may be either idiopathic (primary RLS, which often has a familial component) or secondary, occurring in conjunction with other medical conditions...

Welcome back, Becat, your trips sounds amazing. The ballooning, the family, the talks and connections made about RLS. Having family there who understood what you deal with must have been a help and relief in some ways. I can't imagine the visual delight of ballooning, have always wanted to do it. Se...

Alecto, I totally understand about your resistence to spending money on a sleep study - I think it's a valuable diagnostic tool but not absolutely necessary in order to get some treatment. I feared this very thing when I went to my general practioner in tears early this year, but she never even ment...

As a followup, I emailed a request to the Harvard Brain Tissue Resource Center and got a call yesterday from a very nice woman. She wanted to know how many brochures I wanted...since I have only one brain, it was a no-brainer, so to speak! Does this topic freak people out, or are there folks out the...

You're both right,

Hypo = low
Hyper = high (think hyperactive)

That's my huge contribution to this topic...

Heron

Welcome Chadls74 & Rebecca, glad you found us. It's quite a relief to know your symptoms are real, be able to understand the disease, compare treatments options with others, and sometimes just to ***** a little! You'll find a wealth of info, and friendly support. All the best,

Heron

Well you may be nuts, Nadia, but I'm sure you're on to something! Barometric pressure affects all sorts of things from arthritis to moods to migraines - and I'm sure there's more. Why not RLS too? Best,

Heron

Brady, An excellent post, thanks. I particularly like the part about not becoming the disease or defining ourselves that way. We are all so much more than our illness(es)! Best to you, Heron PS And on that note, I am a great partner, compassionate, funny, love to hike, workout, quilt, fish, cook and...

With so many new folks on the boards these days, it's time to once again bump this up. Please take the time to read about treatment options for RLS.

Heron

Algorithm for the Management of Restless Legs Syndrome

There are ongoing studies on various neurological diseases, including RLS, and the Harvard Brain Tissue Resource Center collects and maintains a brain bank. I have just requested their Brain Donation Questionnaire, which is the first step towards donation. Here are two links: RLS.ORG Tissue Collecti...

Brenda,

Nope, Mirapex definately does not knock me out but it does make me sleepy eventually, so I don't think I could take it during the day as some do (Jan, do you take it during the day?). Hope you've slept decently,

Heron

Regarding Ferritin levels, in the "for what it's worth" category, I had mine checked in May and was at 20 (10-290 is 'normal') so I was on the very low end. After 3 months of oral supplementation my levels increased to 50 something. There has been no change in my RLS symptoms with increased ferritin...

Hey Jan,

Yeah, I know what you mean about hating to be a whiner, and thinking there's always someone worse off then yourself. But we all need a little pity party, a little compassion, and then we can get back on track with life.

Be good to yourself,

Heron

Rethna, It really is a relief to know you're not crazy, not alone, isn't it! I felt the same many years ago when a neurologist gave it a name for me. Welcome, and I hope you can finds some relief. FYI, I'm taking .125mg Mirapex about one hour before bed and that has works most nights for me. If it d...

Welcome Pretzel, It's great to hear you've done a bunch of reading here, even the B&D post! We are a diverse group with many different symptoms & solutions. I'm a lifer, can remember symptoms as a little girl, but wasn't diagnosed until about 10-15 years ago. I used stretching and exercise f...